Abstract
To identify, in caregivers of patients with Alzheimer's disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden. Prospective longitudinal European observational study: post-hoc analysis. Clinic. Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers. Mini-Mental State Examination (MMSE), Alzheimer's Disease Cooperative Study-Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models). Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden. Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.
Highlights
Many individuals with Alzheimer’s disease (AD) are cared for at home by family members or friends (Alzheimer’s Association, 2017; Wimo et al, 2017)
Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months
Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia
Summary
Many individuals with Alzheimer’s disease (AD) are cared for at home by family members or friends (Alzheimer’s Association, 2017; Wimo et al, 2017). Such informal caregiving makes a substantial contribution to the overall care of patients with AD dementia (ADD), helping to keep individuals out of long-term institutional care for as long as possible. It can have numerous negative financial, social, health, and quality-of-life consequences for the caregiver (“caregiver burden”), which may Downloaded from https://www.cambridge.org/core. Costs associated with informal caregiver time form a major component of the societal costs of AD but can be challenging to determine (Darbà et al, 2015; Gervès et al, 2014; Shearer et al, 2012; Wimo et al, 2013)
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